The Association is supporting a project which aims to develop new ways for people living with rare conditions (including MND) to be as physically active as they can and want to be. Exercise can have a large impact on managing day to day life and also general health (bearing in mind that physical activity is a range of activities, not just the gym).

The project is being run by University College London and is funded by the National Institute for Health Research (NiHR). To be successful, the project needs to understand what people living with rare conditions feel are the benefits of engaging in physical activity, and to get their opinions about what should be measured in terms of outcomes from exercise. So, it is essential that the patient groups that the project is seeking to help are involved – this will ensure the study understands what is important to them.

We know that in the case of MND, exercise is not about restoring physical function. What we'd like to know is why it is important to you? For example, does it improved mood, or is it useful in preserving function?

Any information you give will be used to shape the project, and your input will considered as outcome measures are drawn up – you will not be identified in the study.

It would be very useful to have your views on the following:

1. What are your experiences of continuing physical exercise – what are the barriers? What works for you?

2.What do you feel are the benefits of physical exercise for you?

3.What would you measure to show that taking part in exercise has been successful e.g improved mood?

If you would rather send your thoughts direct to a member of staff please email them to

Thank you in advance.